Tuesday, June 28, 2016

11 vials of blood later....

Yesterday was my new doctor visit.  It was a 4 hour drive in thunderstorms and made for a long day.  BUT, all I can say is WOW!  He spent 2 hours talking and reviewing so much information. He had read my 4 page history prior to the visit so most of that discussion was just clarifying things and adding in anything I forgot. He explained everything to me clearly.  I had a lot of blood drawn for food allergy testing, methylation testing, and vitamin/nutritional testing. He was extremely thorough and said there was not much to recommend at this point until we had all the test results.  He said he was able to guess what I needed and why I had problems taking my active B's.  But he said that he needed more information from the blood tests to determine how to proceed and to be more positive on which gene mutations were expressing themselves.  He said I should stay on the leaky gut diet and those supplements related to my gut.

The thing I liked most about this doctor besides being extremely thorough was that he offered no promises nor did he say with 100% certainty he could cure me.  He did offer reassurance that I was right in that there was something else besides MTHFR I needed to address.  He also was not focused on just one thing (gene mutations).  Instead he focused on multiple areas of concern like nutrition and allergies. He also talked to me at my level knowing I'm a nurse.  That alone was a breath of fresh air.  He explained things at a higher level and did not oversimplify  anything.  It made the whole appointment more comfortable and basically easier to get through for both of us.

One thing he said he may end up recommending is a week long course of IV vitamin C, glutathione and choline.  He said because my hubby and I were both nurses he said he would feel comfortable allowing us to do these infusions at home. That would save significant money and drive time!

So overall I am VERY pleased with the appointment and this doctor. He said we will do phone consults from here on out.  My results will be in on some things in 7 to 10 days and 3 weeks for the nutritional panel.  I will of course keep all of my readers updated on the results!  For the next few weeks I have decided to add a few supplements in to see if they will help or not.  I am doing this on my own accord and not on the doctor's  advice.  I'm only doing this because I had already ordered them based on what I thought I needed.  Some of the things the doctor said in our visit confirmed that I probably need these supplements.  I really need to start working full time so I'm doing this so I can measure my reactions while still  only working part time.

Until next time.....happy healing to all!

Tuesday, June 21, 2016


No, I'm not flaring, BUT I have stagnated again with my asthma and hives and dry eczema.  I have been doing very well on my diet, yet I continue to need 1 neb treatment a day for my asthma.  That may not seem like a lot compared to 5 or 6 per day, but I shouldn't be needing any!  Then my weight loss stagnated.  Holding at about 205-206, and it's only been a few weeks since starting to eat better. But then the hives sneak in about once every other day....very small and nothing that causes mad crazy itching, but enough for me to notice and get aggravated.  The patchy eczema on my arms is still almost gone, but a few patches just keep hanging out.  I can't really explain it, but I just feel like I'm not getting ahead here in the healing department.  I have been off all supplements except for those for my leaky gut (l-glutamine and extra gelatin).  I even stopped my active B's because every time I took them I felt off for a few days and having symptoms of over methylation.  Overall I just have been feeling like I'm missing something.

Well, one day last week I came across a post on one of my other FB groups regarding nutrition. Someone posted a link where you can upload you 23&me DNA data and they will tell you which gene mutations you have related to nutrition (like MTHFR).  I think the cost was somewhere in the $40 range for this report.  I got the report and I have 18 homozygous mutations that can be "fixed" with nutrition and/or supplements.  I then proceeded to buy the necessary supplements.  However I did not want to start taking all 15+ supplements at once - if I had a reaction, how would I know what I was reacting to?  So today I proceeded to research each gene mutation and try to decide which one I was going to address first.  Well I have the CBS mutation which basically is worse than MTHFR and can be made worse with MTHFR treatment like methyl donors (like my MSM powder).  It started all coming together as I was reading this....why my skin was getting better but my other issues were getting worse.  I almost cried (but didn't).  I was a bit overwhelmed by how much I did NOT know yet I felt so thankful for coming across this information.  The CBS mutation is actually still being studied as it presents differently from one person to another.  Treatment will be based on blood work results and individual reactions to specific treatments.  Essentially, I would not even attempt to treat this on my own!  I immediately looked up providers familiar with these genetic mutations and how to treat them.  I found one 4 hours away who will do phone consults after an initial in person visit.  He had an opening this coming Monday.  So I have not taken any new supplements.  I will be going to see him and then get his opinion on how to treat all these mutations.  I of course will keep you all informed as to how this progresses.  I have a very good feeling that I will finally be able to heal completely and live a more "normal" life that does not include a strict dietary regimen.  Mind you, my life is comparatively normal when I think back to my TSW days.  Yet, the ongoing hives and asthma were just enough to aggravate me on a daily basis.  I don't have that intense, I'm going to scratch my heart out itch.  But I still itch somewhat on a daily basis....nothing that drives me mad or puts me over the edge.  But enough where I say to myself, "When am I going to finally stop itching for good?"

So keep the chins up and the eyes on the light at the end of the tunnel!  More to come soon!

www.nutrahacker.com  (site to link 23&me data for mutations)

Physician Directory  (find a doctor who can treat you for genetic mutations - this is world wide)

Sunday, June 12, 2016

So much better!!!!

Well it is day 4 of my very limited diet.  All I can say is I'm doing way better!!  No hives and only 2 neb treatments for my asthma in the last 36 hours.  That's truly amazing given I was on average doing 3 to 4 per day.  I was a bit concerned about the bone broth due to my histamine intolerance but so far no hives.  I did have to use my neb yesterday because I ate bacon bits in my salad.  I thought for sure my reaction the other day was due to the eggs, not the bacon. But I had bacon yesterday and got itchy and needed a breathing treatment.  This morning I just had eggs and no reaction.  It really helps to only eat 4 to 5 things total each day.  When I add something new, it is then very obvious what I'm reacting to.

All I can say is I'm very excited to be sleeping all night and not needing a neb treatment first thing upon waking (or being woken up by labored breathing).  It is definitely worth a try for all you warriors out there.  You may not notice things at first due to major inflammation, but given time I do think diet is the key to overall health.

By the way....I've had a huge problem losing weight since going into TSW....I was about 160 lbs at the beginning and I went up to 220.  I've tried numerous times to eat healthier and would only lose 5 lbs at the most.   I made it down to 210 the last few months and was so frustrated because it felt like I was barely eating due to all my hives and asthma yet I couldn't seem to lose any weight.  Well I'm happy to announce I'm down to 207.  That''s 6 lbs in 5 days.  I'm sure a few lbs is just water given my high protein, low carb diet. But it still feels good to see something less than 210.

That's it for now.  I'll keep you all posted as the days and weeks progress.

Friday, June 10, 2016

Healing with food

There is so much controversy on whether or not healing can be sped up with a change in diet.  I personally had less itching and hives whenever I cut out dairy and gluten. I have heard mix reviews. I do know that doing a cleansing diet can actually exacerbate the symptoms of TSW however according to natural medicine, one must get worse before one gets better. This seems to be true for many health problems as well.  Today though I am going to start a discussion on healing with food for my hives and asthma.

I have been writing about my hives and asthma for a good year now.  It seemed as soon as my skin healed, my asthma and hives just escalated. It has been very discouraging to say the least.  For over a year I have also began and stopped my all natural diet so many times!  I was not consistent for any length of time due to moving and stress with my husband still living 12 hours away due to the poor job conditions here in KY.

But the last few weeks I have done a slow progression of heading towards my all natural diet.  I have been working part time so I knew I couldn't stick with it all.  About 3 weeks ago I vowed to not eat gluten for at least 6 months. So far not a bite!  I've been very careful about what I am eating and made sure gluten was in nothing. My hives and asthma have improved about 25 to 30%.

My next step was to do a semi fast of bone broth. Knowing broth is high histamine I knew that if I was going to eat anything at all it would have to be strictly freshly cooked organic meat or cooked veggies.  So yesterday was day 1.  4 cups of beef broth I made at home and dinner of cooked chicken with sautéed mushrooms and onions.  No hives and my asthma was reduced by 50% in the last 24 hours.  Today I had scrambled eggs and organic bacon along with 2 to 3 cups of beef broth.  I have some slight itching so I'm thinking eggs and/or bacon are outof my diet for now.  But no asthma symptoms whatsoever today.

Now I know that using my inhaler or nebulizer 4 to 5 times a day is completely uncontrolled!  I am well aware of that. However I refuse to use an inhaled steroid and singulair.  I know singulair is not a steroid but I want to get off all medications.  So taking it would defeat the purpose of pushing myself to eat better.

Of course things can change.  I will keep you all updated on my progress.  As a side note I'm only taking a few supplements during this...my probiotic, my active B's, and l-glutamine for gut healing.  I stopped everything else to give my body a rest.